Literature DB >> 29030831

Practical Considerations for Using Online Methods to Engage Patients in Guideline Development.

Sean Grant1, Glen S Hazlewood2, Holly L Peay3, Ann Lucas4, Ian Coulter5, Arlene Fink6, Dmitry Khodyakov7.   

Abstract

Clinical practice guidelines (CPGs) have been widely used in healthcare policy, practice, and for suggesting future research. As patients increasingly become involved in CPG development to produce patient-centered recommendations, more research is needed on methods to engage patients, particularly methods allowing for scalable engagement of large, diverse, and geographically distributed groups of patients. In this article, we discuss practical considerations for using online methods to engage patients in CPG development. To inform this discussion, we conducted a rapid, systematic review of literature on patient involvement in CPG development and used qualitative evidence synthesis techniques to make inferences about potential advantages and challenges of using online methods to engage patients in this context. We identified 79 articles containing information about involving patients in CPG development. Potential advantages include the ability of online methods to facilitate greater openness and honesty by patients, as well as to reflect the diversity of patient views, which in turn further improve the utility of CPGs. Potential challenges of using online methods may include the extra skill, time, and certain types of resources that may be needed for patient engagement, as well as the difficulty engaging specific patient populations. However, these challenges are mitigated by growing calls for patient engagement as normative for CPG development in addition to patients' increasing familiarity with online technologies. These practical considerations should be examined empirically as guideline development groups further explore the appropriateness of using online methods to engage patients across different stages of CPG development.

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Year:  2018        PMID: 29030831     DOI: 10.1007/s40271-017-0280-6

Source DB:  PubMed          Journal:  Patient        ISSN: 1178-1653            Impact factor:   3.883


  50 in total

1.  A community-engaged approach to quantifying caregiver preferences for the benefits and risks of emerging therapies for Duchenne muscular dystrophy.

Authors:  Holly L Peay; Ilene Hollin; Ryan Fischer; John F P Bridges
Journal:  Clin Ther       Date:  2014-05       Impact factor: 3.393

2.  Rapid evidence assessment: increasing the transparency of an emerging methodology.

Authors:  Tracey Varker; David Forbes; Lisa Dell; Adele Weston; Tracy Merlin; Stephanie Hodson; Meaghan O'Donnell
Journal:  J Eval Clin Pract       Date:  2015-06-29       Impact factor: 2.431

3.  DEFINING RAPID REVIEWS: A MODIFIED DELPHI CONSENSUS APPROACH.

Authors:  Shannon E Kelly; David Moher; Tammy J Clifford
Journal:  Int J Technol Assess Health Care       Date:  2016-10-11       Impact factor: 2.188

4.  Failure of clinical practice guidelines to meet institute of medicine standards: Two more decades of little, if any, progress.

Authors:  Justin Kung; Ram R Miller; Philip A Mackowiak
Journal:  Arch Intern Med       Date:  2012-11-26

5.  Caregiver preferences for emerging duchenne muscular dystrophy treatments: a comparison of best-worst scaling and conjoint analysis.

Authors:  Ilene L Hollin; Holly L Peay; John F P Bridges
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

6.  When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.

Authors:  Liana Fraenkel; Amy S Miller; Kelly Clayton; Rachelle Crow-Hercher; Shantana Hazel; Britt Johnson; Leslie Rott; Whitney White; Carole Wiedmeyer; Victor M Montori; Jasvinder A Singh; W Benjamin Nowell
Journal:  Arthritis Care Res (Hoboken)       Date:  2015-11-06       Impact factor: 4.794

7.  Why consider patients' preferences? A discourse analysis of clinical practice guideline developers.

Authors:  Antoine Boivin; Judith Green; Jan van der Meulen; France Légaré; Ellen Nolte
Journal:  Med Care       Date:  2009-08       Impact factor: 2.983

8.  Feasibility of a wiki as a participatory tool for patients in clinical guideline development.

Authors:  Elvira M E den Breejen; Willianne L D M Nelen; Jose M L Knijnenburg; Jako S Burgers; Rosella P M G Hermens; Jan A M Kremer
Journal:  J Med Internet Res       Date:  2012-10-26       Impact factor: 5.428

9.  Methods for the thematic synthesis of qualitative research in systematic reviews.

Authors:  James Thomas; Angela Harden
Journal:  BMC Med Res Methodol       Date:  2008-07-10       Impact factor: 4.615

10.  What are the key ingredients for effective public involvement in health care improvement and policy decisions? A randomized trial process evaluation.

Authors:  Antoine Boivin; Pascale Lehoux; Jako Burgers; Richard Grol
Journal:  Milbank Q       Date:  2014-06       Impact factor: 4.911

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  10 in total

1.  Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations.

Authors:  Dmitry Khodyakov; Sean Grant; Brian Denger; Kathi Kinnett; Ann Martin; Marika Booth; Courtney Armstrong; Emily Dao; Christine Chen; Ian Coulter; Holly Peay; Glen Hazlewood; Natalie Street
Journal:  Med Decis Making       Date:  2019-11-13       Impact factor: 2.583

Review 2.  Broadening the diversity of consumers engaged in guidelines: a scoping review.

Authors:  Anneliese Synnot; Sophie Hill; Allison Jauré; Bronwen Merner; Kelvin Hill; Peta Bates; Alexandra Liacos; Tari Turner
Journal:  BMJ Open       Date:  2022-06-16       Impact factor: 3.006

3.  What are the Relevant Outcomes of the Periodic Health Examination? A Comparison of Citizens' and Experts' Ratings.

Authors:  Isolde Sommer; Viktoria Titscher; Monika Szelag; Gerald Gartlehner
Journal:  Patient Prefer Adherence       Date:  2021-01-18       Impact factor: 2.711

4.  Participant experiences with a new online modified-Delphi approach for engaging patients and caregivers in developing clinical guidelines.

Authors:  Courtney Armstrong; Sean Grant; Kathi Kinnett; Brian Denger; Ann Martin; Ian Coulter; Marika Booth; Dmitry Khodyakov
Journal:  Eur J Pers Cent Healthc       Date:  2019

5.  Online Modified-Delphi: a Potential Method for Continuous Patient Engagement Across Stages of Clinical Practice Guideline Development.

Authors:  Sean Grant; Courtney Armstrong; Dmitry Khodyakov
Journal:  J Gen Intern Med       Date:  2021-03-19       Impact factor: 6.473

6.  Patient and caregiver perspectives on guideline adherence: the case of endocrine and bone health recommendations for Duchenne muscular dystrophy.

Authors:  Brian Denger; Kathi Kinnett; Ann Martin; Sean Grant; Courtney Armstrong; Dmitry Khodyakov
Journal:  Orphanet J Rare Dis       Date:  2019-08-20       Impact factor: 4.123

7.  Stakeholder consensus for decision making in eye-gaze control technology for children, adolescents and adults with cerebral palsy service provision: findings from a Delphi study.

Authors:  Petra Karlsson; Tom Griffiths; Michael T Clarke; Elegast Monbaliu; Kate Himmelmann; Saranda Bekteshi; Abigail Allsop; René Pereksles; Claire Galea; Margaret Wallen
Journal:  BMC Neurol       Date:  2021-02-10       Impact factor: 2.474

8.  The impact of panel composition and topic on stakeholder perspectives: Generating hypotheses from online maternal and child health modified-Delphi panels.

Authors:  Dmitry Khodyakov; Sujeong Park; Jennifer A Hutcheon; Sara M Parisi; Lisa M Bodnar
Journal:  Health Expect       Date:  2022-01-06       Impact factor: 3.318

Review 9.  Patient and public involvement in the development of clinical practice guidelines: a scoping review.

Authors:  Elizabeth Ann Bryant; Anna Mae Scott; Hannah Greenwood; Rae Thomas
Journal:  BMJ Open       Date:  2022-09-28       Impact factor: 3.006

10.  Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development.

Authors:  Dmitry Khodyakov; Sean Grant; Brian Denger; Kathi Kinnett; Ann Martin; Holly Peay; Ian Coulter
Journal:  Patient       Date:  2020-02       Impact factor: 3.883

  10 in total

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